CF Diagnosis: Part 3

This post is part 3 in the story of Madeline's diagnosis with cystic fibrosis. Check out part 1 and part 2 for the beginning of her story.

During one “routine” visit to check Madeline’s weight, our pediatrician asked, “Do you have a history of cystic fibrosis in your family?” I was completely taken aback. Cystic fibrosis? No way.

Although the pediatrician was growing increasingly stumped, it honestly shocked me that he was thinking of something so serious—and that he was thinking of cystic fibrosis at all. Neither Dave nor I have a history of CF in our families, and despite my inkling that something was wrong with dear Maddycakes, a big part of me still expected to find something wrong that could also be easily fixed.

It’s interesting to look back at this moment—the first time that I ever heard or thought about cystic fibrosis in connection with my daughter, and probably the last time that cystic fibrosis was ever abstract to me. It all seems so obvious now, but my surprise at the idea was probably a direct result of my own lack of knowledge. Although I understood that CF is a lung disease that involves excessive amounts of thick, sticky mucus, I had no clue that CF also affects the digestive system and can lead to poor weight gain.

Of course I read up on CF after our appointment so I would know more about its symptoms, but it was fairly easy for me to dismiss it as a cause of Madeline’s small size, especially because the state of Utah actually began screening for cystic fibrosis as part of the newborn screening panel just six weeks before Madeline was born. We all had every reason to think that if she had CF, it would have already been identified through the newborn screening panel.

Or at least that's what I thought until I received a letter from the Utah Department of Health near the end of March.

Read part 4 of Madeline's diagnosis story here.